I was diagnosed with TOS on right hand side in October 2010. It was caused by a very large Lipoma, a benign fatty tumour, nestled amongst the nerves, tendons and muscles in the right hand side of my neck, going into the thoracic outlet.
My surgeon reported that it was the size of an orange and had compressed everything in the thoracic outlet area. I had all the usual MRI’s, scans and neurological tests, but they were more to exclude things rather than to diagnose.
I started to present with symptoms on my left hand side as well and there was some talk about a rib resection, which I wasn’t pleased about and refused.
My surgery was in August last year and was successful but scar tissue has now grown, and less than six months later was already causing more blockages around the subclavian vein and more hurties in my arms than the original tumour.
I now I have to have the 1st rib resection to make room in case of more scar tissue growing after this second operation in the same area.
The issues I originally presented with included:
Cutting pain across the lower thoracic area of my back;
Tingling fingers, couldn’t drive, keyboard or use a mouse with discomfort;
Cold, sore arms and sore armpits with the sensation of blockages and lumps that stopped me from sleeping or lying on my side. Could not carry milk bottles or groceries in the end;
Collapsed shoulder;
Twisted spine and pulling on nerves at the c4/c5 area;
Lots of anxiety flushes that I could not control, I started to road rage out of my frustration;
Constant, radiating pain from between my shoulder blades, even my special chair provided by my workplace could not help with the discomfort that caused;
My arms ached with any kind of use, drying the dishes, cleaning teeth, showering, preparing meals;
I could click joints, my head would click in my neck just from looking up from reading or keyboarding and looking at my screen. Even pushing my glasses up my nose or turning a page in a book, not every time, but with a frequency and loudness that could entertain.
I have been reading this forum for sometime now and it has given me the confidence to go ahead with the second surgery after Easter. I would like to thank everyone online for sharing their stories as they become empowering to others.